Angelica Grace Designs Blog

Wednesday, July 22, 2009

THANKFUL

Unless you are a long time blog follower, you'd probably never know that Kenidi used to be basically bald on top of her head. For those who've been faithful, frequent, readers of the AGD blog for the past almost 4 years, I'm sure you remember many photos of Kenidi back when she used to pull her own hair. I'd design sets and would have to hide the damage she had done with hats and such whenever I'd photograph the new outfit. When went through a long phase with her where she would get so frustrated because she couldn't speak or communicate, that she would ultimately pull out her own hair from sheer anger. With her hypotonia (low muscle tone) came the inability to talk. Because of that, she was trapped within her own body and unable to articulate what she wanted to say to us, or when she was hungry, thirsty, tired, in pain, etc. It was an awful time for our whole family. Each time she'd pull a handful of hair out, it would crush Brent and I especially. And because she was on depakote medication for her seizures, the hair she pulled would come out extremely easy for her because the medication promoted hair loss as it was. We tried everything to get her to stop. We took her to psychologists who studied her every move - trying to understand how to detour her. We had doctors tell us to put socks over her hands and put her in time out whenever she did it. We went thru H - E - double hockey sticks and back basically. It wasn't until she and I were interviewed by our local news channel in regards to AGD and the business it had become, that I finally found a cure.

To this day, I owe Angela Ganote, a news reporter from Indiana's own Fox 59, for the cure to Kenidi's hair pulling. When Angela was in our home taping and interviewing my story for the background on AGD, we sat down at one point off camera and began to chat. We got to talking about how Kenidi was doing this hair pulling thing and she was to the point now where she looked like a child going thru chemo treatments or something. Angela then proceeded to tell us that she had ironically gone thru the same problem with her own daughter. She said initially she would get on her for it but then she had a friend to tell her that when her daughter did it, she needed to acknowledge it but then pretend as though she could care less about it. So...she told me that when Kenidi did it next time...I should look at her and go..."I don't care if you pull your hair. However, if you are going to pull it, go in the other room and do it."

By acknowledging it, it showed Kenidi that I had seen what she was doing. But then by acting as though...no biggy - just go in the other room - it taught her that I could care less and she was no longer going to get a rise out of me.

Up to this point, we eventually had to cut her hair off up to her neck and attempt to let everything begin growing again so that it would become even. In the meantime, I had her wearing scarves, hats, and headbands to hide the fact that her hair was so much shorter on top then the rest of her head.

Because if I didn't cover it up with hats and such, she looked just like this...

And because she looked like that, we got stares every time we went into public. We'd get comments from people in regards to cancer because they thought she was sick. She was sick all right - but not with cancer. The damage she was doing to her hair was brought on by her frustrations and not an illness. Sooner or later though, our prayers were finally answered thanks to Angela's advice. After all of the doctors, tricks we were told to try, etc. - her advice finally won the war. We tried the approach she recommended to us and would you believe that within 3 days of saying that one line to Kenidi, she had totally quit pulling her hair? She quit pulling her hair and the front/top slowly but surely began to grow out and catch up with the length of the back. Before we knew it, we could start letting her wear hair bows again...

And then fast forward to about 3 years later and she now has this luscious head of hair. Hair that I dream about daily and wish I had myself. Hair that looks like what I'd imagine "Goldilocks" having.


Brent noticed her hair as she sat in the backseat of the car today. He turned to me and said..."Look how angelic she looks sitting back there with the wind blowing thru her hair like that." I was shocked because I had just been watching her earlier this morning after she got out of bed. I was watching her and her hair - thinking..."I need to go get my camera...her hair looks fabulous right now." So for him to bring up her hair after I was just admiring it an hour before - was pretty ironic. He said to me that maybe we had to go thru all of that hair pulling and baldness with her in order to get to the beautiful head full of hair she has now. I think he might be right. I can tell you this...she did NOT have the hair she has now - back before the hair pulling. Her hair is completely different today compared to what it was 3 years ago. I don't know why but it is. If you look at the above photos of the "before" shots as she was pulling it out, and then compare them with these current shots of her from today, you can really see the difference in the thickness, amount, etc. of her hair. She is blessed. As are we.

It just goes to show you that with a lot faith, a lot of prayer, and many conversations with God, anything is possible. 10 months into Kenidi's life, we didn't know if she would ever walk, talk, etc. But here we are today - 6 years later - with a beautiful daughter who has a gorgeous head full of hair...who walks...and who is getting better and better each passing day with her talking. Just this week she learned to say YES instead of yeah. Normally she can't pronounce the "s" on the end of things. However, she accomplished a new word a few days ago and we couldn't be more proud.

So parents...when you are wishing your son or daughter would stop jibber jabbering because they are talking non-stop and won't hush...just think of Kenidi and the struggle she goes thru on an hour by hour basis to even communicate the basic words like "yes and no." When you run your fingers thru your child's hair as you tuck them into bed tonight or as you comb their hair in the morning, remember how blessed you are that your child has a head full of hair and isn't pulling it out or loosing it via cancer/chemo treatments. Think about how blessed we all are and please say a prayer for those who aren't as fortunate as us. There are many parents in hospitals as I type who'd give up their child's hair for another month with their son or daughter who is fighting a loosing a battle to cancer. Again, we are so fortunate, so very blessed.

Brent and I thank God everyday for Kenidi and all of the accomplishments she has conquered in her 6 short years of life. There was a day when we didn't have a clue if any of this would be possible. However, we had hope! We know without a shadow of a doubt that Jesus has big plans for Kenidi and her future. Will she ever be able to live on her own? We don't know. Will she ever be able to have a drivers license because of her Epilepsy? We don't know. Will she be able to grow up and get married like a normal girl would? We don't know. What we do know though is this...

God is good and God is in control! He has proven that to us time and time again. Maybe with a lot more faith, a lot more prayers, and God's constant reminders of his promises, we will one day be able to look back on this era and say..."Yes, she is driving a car and has a license. Yes, she is living on her own. And then Yes, she is getting married and having babies." As I've said before, the motto I live by each day is..."There will be years that ask and there will be years that answer. In the end, God NEVER wastes pain!"

xoxo, Angie

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26 Comments:

Blogger Preemie mom said...

What a powerful message. Thank you for the words. While reading your post I thought of my little Alicen. She cannot sit up so obviously she is on a back a LOT so this means that the back of her hair is gone from rubbing on the pillow, etc. She too has a full head of hair, curly red at that, but just not in the back. When she is in her wheel chair you can really see it and we have got a few comments as well. While Alicen is not as "advanced" as Kenidi, I can see a lot of the same mannerisms in them. Alicen also has Epilepsy and CP, so she is special too. I love the last line in your post. God never wastes pain. So true. Thanks again for the words and most of all for sharing.
Christina ( apreemie mom)

7/22/2009 8:33 AM  
Anonymous Melissa M said...

Angie,
I love this post today!!!

Hair or no Hair, Kenidi was still adorable!

7/22/2009 10:05 AM  
Blogger Coach's Wife said...

Angie,
I love reading your posts, but haven't made a comment before, but this post just moved me. I can't imagine what you deal with in the general public, because to be quite honest, most people are just ignorant! :) Kenidi (which our almost 6 year old is Kennedy) looks beautiful and perfect, they just don't see her inner imperfections. Although to God she has none. I pray and have faith that one day she will be a mother, wife, whatever she wants to be and I believe she can acheive that through Jesus' hand and you and Brent as parents. And of course with a big brother like Brennan, how can a girl go wrong??? You making the comment about her hair, our Kennedy was bald for over 2 years of her life. She just never grew hair, so I can't compare it to what you have been through, but since she had so little hair, I never wanted to cut it. It was thin, stringy, just baby like. We finally cut it into a stacked bob around 4 years old and even though it's still pretty stringy and fine, it's definately getting thicker and looking better. I dont know what it is, but I guess just starting over with new hair helps! I keep hoping my Kennedy can get hair just close to you Kenidi!! Good work sister! Your blog is such an inspiration to me. Oh and an escape because I would love to be down there where you are now instead of HOT MUGGY OKLAHOMA!

7/22/2009 10:21 AM  
Blogger Whispers of Faith said...

Angie,
Thank you so much for sharing your faith, your heartache, your joys, your journey with all of us. It is through you that I gain more strength, more, faith, more appreciation for the simple joys of life. God knew exactly what He was doing when He placed sweet Kennidi in your life....He knew that her struggles would be the greatest forum for which you could proclaim your trust in Him, your love for Him, and your peace....

Many, Many, Many thanks for sharing your life so candidly....so openly....so honestly!
Blessings,
Melissa

7/22/2009 10:33 AM  
Anonymous Anonymous said...

Angie,
Your sweet Kenidi is a beauty; those locks are to die for!! My sister and neice both have epilepsy; my sister also endured hair related side effects from the depakote as a child. She lost a lot of it from things as simple as brushing and washing; when it grew back it was thicker and cork-screw curly! Prior to, she had thin, pin-straight hair! One of the things I love most about your blog is your honesty and your ability to be so appreciate of everything in life. It's so easy to overlook the "little things" but you have an ability to make me stop and realize that all of those little things are really so much more than they seem. Here is to Kenidi accomplishing the word "yes" and to all of the other blessings that God has bestowed upon us. Thank you, Angie, for sharing.

Lisa in SC

7/22/2009 10:56 AM  
Anonymous Amy Clover Mutchler said...

Angie your photos are so crisp and clear - what lens did you use? Was this inside? It seems like you get perfect light in your photos - HOW??"

7/22/2009 11:03 AM  
Anonymous Karen R said...

Kenidi certainly IS a beauty! Even though she tries to ignore me whenever she sees me! HA!

I am proof that there is hope for bald babies! I had no hair until I was over 2, and then, it was fine a wispy. Someone told my mom to CUT it, which she did. As you know, now, 50-SOMETHING years later, I have a full, thick head of hair. OK, I don't really know what COLOR it really is, but it's hair! (I have a feeling it's mostly white!)
Blessings on little Kenidi, and on all of you!

Karen

7/22/2009 12:27 PM  
Blogger Kelly said...

Angie,
I am SO guilty of reading your blog and never leaving comments. As a mother to a daughter, I especially love reading about your precious Kenidi. I am also a special education teacher for grades K-2 and I find myself cheering Kenidi on as you talk about her progress. She is blessed to have parents like you in her corner.

7/22/2009 12:53 PM  
Anonymous Angela Shanholtz said...

Her eyes are just beautiful. She is precious!

7/22/2009 1:02 PM  
Anonymous Alison Rubel said...

Kenidi is so beautiful in ALL of those pictures :) That advice you got was wonderful; I am so glad it worked for you! I knew a family that did the same thing with one of their kiddos who used to eat plastic coins ;) Nipped it right away...

7/22/2009 1:04 PM  
Anonymous Sheryl Watkins said...

Isn't it funny how God puts people in our path that gives us the answer ?
God is good :) and so in Kenidi's hair now too :)
My daughter used to twist her hair in back as a way to get to sleep. It would be horribly knotted, no matted, in the morning. We would have to sit there for an hour un tangling it. No matter what we did she got to her hair and tangled it up every night. Finally at our wits end I just ignored it and acted like it was no big deal and low and behold in 2 days she stopped doing it. She has SUPER thick and lusious hair now and I swear, the twisting and damage she did before made it grow in thicker and fuller, LOL.
This "tactic" still works like a charm on my daughter. :)

7/22/2009 1:54 PM  
Blogger aLena said...

Angie, you and your family are truly an inspiration! I have only started reading your blog recently and did not know about Kenidi's condition, but that just shows how far you've come.

Thank you for sharing, sweet Kenidi will always be in my prayers because I know that with God anything is possible!

7/22/2009 2:07 PM  
Blogger Kristin said...

Wow, Angie! I just love this post. I had no idea that you had went through that time. I just love how God orchestrated everything for you to meet the one person who could give you the solution that would work. That's so awesome! I think Kenidi is the most beautiful little girl!

7/22/2009 2:44 PM  
Anonymous Grandma Sue said...

Well this just wrecked my makeup. I remember those days, I never could figure out how it didn't hurt her to pull that hair out by the roots like that, I guess the hypotonia, and the low muscle tone thing kept her from feeling the pain like most people. I remember even Riley Childrens Hospital trying to make an apperatis for her to bite down on when she would get ready to pull her hair. That didn't last long. One thing I do remember is that you always had patience with her, no matter what, and she was always beautiful, and always will be. I believe, as do you, that God has wonderful plans for her. I also believe that God could not have picked any better parents and big brother, than you guys. Perfect, all around! I am certainly proud to be her Grandma Sue!

7/22/2009 3:43 PM  
Anonymous Anonymous said...

Angie,

What a beautiful post. Kenidi is a beautiful little girl she is soooo lucky to have you and Brent as her parents and Brennen as her brother.

BYW when is the fall collection going to be introduced soon??????

Thanks and again moving and beautiful post....Glenda

7/22/2009 4:14 PM  
Anonymous Nicole Ryan said...

I remember those days!!! Her hair is amazing...and so is she!

7/22/2009 4:53 PM  
Blogger Amanda said...

Wow! What an incredible post! I really needed this today.

I also have a child with special needs...Sensory Integration Disorder (basically sensory overload). And like you, we've come a L-O-N-G way. Many times people thought Connor had autisim. But with God's help he's improved 110%!!

Since it is summer, we have chosen not to give him all of his meds. And his chattering can drive me up a wall somedays!!

This was a gentle reminder of where we have come from. And like you, I need to just be thankful that the child can communicate!

Thank you, Angie. Hope you, Kinidi, and the rest of the family enjoy the rest of your vacation!!

Looking forward to lesson 4 tomorrow!!

7/22/2009 5:15 PM  
Anonymous Cathy Wilkens said...

What a beauty, Angie. She must be such a delight to her parents.

7/22/2009 8:44 PM  
Anonymous Shannon Nunnelly said...

Thanks for the story on the blog. Everyday is a blessing!

7/22/2009 8:46 PM  
Blogger ~Amy said...

Thank you for sharing! I am forwarding your BLOG to a friend who could get some advice from your post! Kenidi does have BEAUTIFUL hair....and a beautiful family! PRAISE God for her progress!!

7/22/2009 9:12 PM  
Blogger Amy said...

I was talking with some friends earlier this week about how even in the midst of what seems like pure evil, God can bring about grace. What a beautiful post.

7/23/2009 1:01 AM  
Anonymous Anonymous said...

Angie,

What a beautiful post! Kenidi is a wonderful gift from God and what a blessed family you all are to have been chosen to have this little angel in your life. Thank you for sharing today!

Mrs. Jennifer

7/23/2009 8:33 AM  
Blogger Missy said...

Angie,
This post, for obvious reasons, really touched my heart. I, too, had the same worries and doubts. Nobody can tell you what your child will or will not do.... we are so grateful for every step! Every stage!

Thanks for the wonderful blog post and the beautiful pictures of Kenidi! Lord I wish I had that hair!

7/24/2009 2:05 AM  
Blogger chanteusevca said...

Angie, It's not often that I get the opportunity to sit and read your blog, but I was prompted to read it today and I am so glad I did. We are blessed to be a blessing to others. The blessings you and your family receive through Kenidi touched my heart in your post today. I ijmediately forwarded it to all of my children, but especially for my oldest daughter who just had their third child -- a little girl, Ailey Katherine, after two rambunctious little boys Sam and Eli. The oldest, Sam, has sensory issues like one of your posters above mentioned with her son. Sam is very bright and intelligent. he even told his parents that they were having a baby sister before they found out from the sonogram that the baby was as girl. Then he gave her the name "Ailey" which my daughter and son-in-law had never heard before, but was quite significant for my daughter as she is a dancer (former Rockette) and has always greatly loved and admired the Alvin Ailey Dance troup in NYC. So Sam can be quite wonderful and amazing, but can also be a very frustrating and challenging many days. Some days my daughter is at her wits end with Sam's issues. And because her husband works long hours as an attorney and at times has to travel, she is often left alone with the children for long periods. Even with no major issues, motherhood can be a challenge that never ends. My daughter emailed me back to tell me that she really needed to read your blog post today. So thank you for sharing your struggles and your triumphs. And what you said is so true. God never wastes our pain. He walks with us through it and when we don't have the strength to go on, he carries us safely to the other side of the pain of our problems.

Blessings,

Victoria in Texas

7/24/2009 1:17 PM  
Blogger PamperingBeki said...

She's such a pretty little girl.

I'm glad the hair pulling stopped! Did you know that there's an OCD where people pull their hair? It's called trichotillomania.

7/24/2009 1:57 PM  
Blogger Angie Seaman said...

Hey Beki. Yeah, believe it or not, they thought she might have had that in the beginning. I think that is the OCD where they actually "eat" the hair once they've pulled it. It's so sad! However, thankfully she didn't have it. Scary stuff!

Ang

7/24/2009 2:01 PM  

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